Tag: diagnosis

Sudden closure of UK National Cancer Research comes as Huge Blow

by Lizbeth, posted in cancer, health, Uncategorized

Written by Dr Elizabeth Johnston-Young

The UK is a world class leader in cancer research. Since 2001 all the hard work given by all at The National Cancer Research Institute (NCRI) has played a very large part in this. After 22 years the NCRI closes its doors. The announcement about this charity of the sudden closure of this UK National Cancer Research Institute comes as a huge blow.

The charity grew over its 22-year lifespan, linked up with many partners including Blood Cancer UK, Breast Cancer Now, Prostate Cancer UK, Pancreatic Cancer UK, plus many more. Fabulous work taken place including trials, research, specialist cancer groups, and networks. All fr the greater good of those affected by cancer; working together to improve coordination of cancer research throughout the UK and beyond. Improving the lives of millions of people around the world.

Professor Lawrence Young, Professor of Molecular Oncology, University of Warwick, said: “This is yet another blow to the UK research community”

Almost 400 000 new cancer cases are diagnoses every year in the UK. Understanding the way to treat the cancer for the best possible outcome is the goal. For some prostate and breast cancers NCRI came into its own with trials, involving radiotherapy combination trials and research resulting in treatment reduction from weeks to days.

Professor Lawrence Young, Professor of Molecular Oncology, University of Warwick, said: “This is shocking news that will significantly impact cancer research and the development of new treatments in the UK. This is yet another blow to the UK research community and to the position of the UK as a world leader in cancer research”.

22 Years of Ground-breaking Research to Sudden Closed Doors at The National Cancer Research Institute

The abrupt closure of the NCRI will be a huge void in cancer research. The charity well and truly made its mark, bringing the whole cancer research community together covering the whole UK and beyond. Working to improve the overall quality of life of anyone affected by cancer. Understand the cancers, develop the treatments, lessen the symptoms!

There were countless trials and research projects that have helped and will still go on to help so many people. A study showing Children with kidney cancers continue to be diagnosed with larger and more advanced tumours in the UK and Ireland than in other Western European countries, according to research presented at the NCRI Festival.

A study by Dr Jonathan Wadsley, a consultant clinical oncologist let us know Patients with low-risk thyroid cancer can receive lower dosed of radiation treatment. Thyroid cancer is relatively rare with a diagnosis of 3500 people per year in the UK, there were 434 patients in the trial. Contributing to a good study.

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Trials and research improving lives of millions

Professor Robert Huddart, Professor of Urological Cancer at The Institute of Cancer Research, London, and Chair of the NCRI Radiotherapy Working Group (former known as CTRad), was saddened to hear the upsetting news. He said; “The UK has developed the reputation for the delivery of high quality, innovative academic trials that has changed practice and improved the outlook and lives of millions of people around the world. In radiotherapy examples include trials that introduced advanced technology reducing side effects and improving outcomes, changed prostate and breast treatments from five weeks or more to a few days”.

Professor Nick James, Professor of Prostate and Badder Cancer Research at The Institute of Cancer Research, London commented: “This news is astonishing. It could be devastating for people with cancer in this country”.

Charity Partner, Blood Cancer UK Deputy Director of Research, Sarah McDonald comments on the need for clinical trials. Stating they are the route for those living with blood cancer to access treatment. Sarah Commented: “It’s sad this long-standing multi-partner collaboration will be winding down. The partnership has had success, helping thousands of people get access to potentially life-saving treatments” . She went on to say, ” NCRI has played an important role at Blood Cancer UK. We’re deeply committed to continue collaborating with researchers, patients, charities, and government to ensure the hard work of the NCRI isn’t lost”.

The NCRI have made this decision after much though and debate. The uncertain economic and research environment has had an impact on the charity. After consulting with stakeholder, it was questionable that NCRI would be able to survive in the long term. therefore, proving a risk of operational failure. Hence the decision to close.

Fiona Driscoll, NCRI Chair stated: “It is with a mix of pride and regret that we write to inform you, that after 22 remarkable years, the NCRI will be winding down. This decision has not been taken lightly and has a huge impact on the NCRI staff. We are grateful for their continued support, hard work, and professionalism at such a challenging time”.

Massive blow for research

This is a dark day, especially for anyone affected by cancer. A massive blow for research and clinical trials. Remembering the extremely hard work that has taken place, passing on information is vital so the wonderful work of the NCRI is carried on.

female lab technician doing research with a microscope in the lab.
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Today is NET Cancer Day

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

Today is Net Cancer Day. November 10th is the annual awareness day for Net Cancer. So many people wait for a long time for a diagnosis. Go back and forth to their doctors with symptoms and get told it is irritable bowel or something else other than the actual cancer. When Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common—and potentially more likely—diagnosis. Net Cancer and Carcinoid Syndrome is rare hence not the first thing the doctor looks for. Awareness needs to be raised for this cancer. Today is NET Cancer Day and the hope that the message gets around the world – raising awareness of this cancer.

Think zebra not horse

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

Most people in life know someone with cancer. Or are knowledgable about signs or symptoms of some kind of cancer. However the rarer less known conditions need the help of Doctors, writers, patients, etc to promote awareness to get their name out there and help others know what to look for. “Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common and potentially more likely—diagnosis. In oncology zebras have to be thought about. If a clinician isn’t as familiar with rare conditions, they may spend too much time looking for the proverbial horses. One such rare disease is Neuroendocrine Cancer and carcinoid syndrome. November 10th is Net Cancer Day. For the patient and the diagnosis it is all so important for the doctor in the big important Think zebra not horse.

Getting a diagnosis of Net Cancer can be difficult. It often goes misdiagnosed and the diagnosis is delayed and very often a person is told they have the cancer once it has spread to other organs and is incurable.

Living with Nets and carcinoid syndrome isn’t always easy. There are days it can really take over your life and just getting out of bed is a real struggle. However, there are great treatments and support networks out there to help you on your way. Looking after your body, eating the right things, meeting up with people and talking can all help in your cancer journey. I certainly know meeting up with likeminded people from The Ann Edgar Charitable Trust and sharing experiences has been a lifesaver. Making super friends along the way, the only down side is losing some dear ones to this damn condition.

On this eve of Net Cancer Day I think of the amazing buddies I have made since the day I was told I had carcinoid syndrome. I keep up with and chat to friends we share what’s going on in our medical life. I have lost and miss some lovely zebra, including Ann, Didi, Pam, Janny, Margaret, Becky, Norman, Linda. Celebrity zebra have included Audrey Hepburn, Steve Jobs, Aretha Franklin.

Audrey Hepburn’s son did a newspaper interview – you can view it HERE

Common symptoms of NETs include:

  • Flushing (redness, warmth) in the face or neck without sweating.
  • Diarrhea, including at nighttime.
  • Shortness of breath, rapid heartbeat/palpitations.
  • High blood pressure.
  • Fatigue, weakness.
  • Abdominal pain, cramping, feeling of fullness.
  • Unexplained weight gain or loss.
  • Wheezing, coughing

The symptoms of a neuroendocrine tumour depend on where in the body it is and what hormones it produces.

Diagnosing neuroendocrine tumours

Many tests can be used to diagnose neuroendocrine tumours, including blood tests, urine tests, scans and a biopsy  (where a small tissue sample is taken for closer examination).

Types of scans used include:

Treating Net Cancer and Carcinoid Syndrome

Every patient has their treatment plan tailor-made for them. No one person is exactly the same. They may have the same germ cell. Could have been diagnosed with almost literally the same diagnosis – it does not mean the treatment will be the same. All our bodies react differently, we give off different hormones, etc. And to be honest we may not have the same attitude to the consultants conversation in the room.

Treatments Include:

For some people surgery is an option.

Somatostatin Analogues – may be used to help control the secretion of hormones if abnormal levels are being produced

Embolisation – Treatment that blocks the blood supply using chemotherapy, radiotherapy or radiofrequency ablation

Treatments used for some Inoperable and metastatic cancer:

Everolimus is taken as a tablet, sunitinib is taken as a capsule and lutetium is given into a vein.

Let’s Talk About Nets